Sickle cell and bone marrow transplant (I)

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p style="text-align: justify;">This is the successful story of a young girl who had bone marrow transplant in Melbourne, Australia.  Her story is detailed by her mother Agnes Nsofwa of Australia Sickle Cell Advocacy.

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p style="text-align: justify;">Our daughter was born with sickle cell anaemia over 11 years ago.  This all started around June or July 2008 when I was expecting our fourth daughter. I was home alone one evening when all of a sudden I felt different.  I felt sick and when I took my temperature, I had a fever. I took panadol and after a few hours the fever went and I was okay. The next evening around the same time, I felt the same way, so I did the same thing as the previous evening, rested and after a few hours, I was okay. This continued the following evening and I did the same thing all over again; same time, similar symptoms.  At this point I told my husband who was working out of town. He encouraged me to go to a hospital but I waited for him to arrive the following day. Once home, he took me to the hospital and around the same time the symptoms returned. This time, the pains never went away and I ended up being hospitalised for over eight weeks for an unknown disease. Two weeks during this admission found me in the isolation part of the intensive care unit.

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p style="text-align: justify;">During the routine blood tests, the doctor picked out that I had the sickle cell trait. But no follow up was done on my husband to determine if he also had the SCT or to prepare us on whether or not our daughter was going to have sickle cell disease. I was treated with trial and error medications and at one point, I was jaundiced.  I had symptoms similar to sickle cell crisis. I was unable to walk and my HB kept dropping.  Our daughter was diagnosed with SCD at 14 months old. I believe, had we known she had the disease at birth; the complications she endured pre and post her diagnosis could have been avoided or managed promptly as they occurred.

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p style="text-align: justify;">The first five years after her diagnosis, we did not tell many people. We only told our close family members whom we encouraged to get tested; and a few friends, some of them had children also affected by SCD. Consequently, the process of grief started for us.  I was in denial that maybe there was a misdiagnosis, maybe they got it wrong and that after a few weeks, the doctors would tell us it was a mistake. I had these thoughts in my head for a long time.




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p style="text-align: justify;">Even when she needed blood transfusion, in my head I still believed there was another explanation. Those were the hard years. Our lives changed from never ever visiting a hospital for any of our children to having to go to hospital every two weeks or more. Giving her medications was a struggle. She cried uncontrollably because it was bitter and I cried because she was crying. I spent hours and hours on the internet finding information about a cure for SCD. I became obsessed with any SCD news.

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p style="text-align: justify;">I joined several Facebook groups for SCD. But later, I realised that the news I was reading on some of these groups were actually depressing me more. I could not comprehend what people in the groups were going through.  And to think that our daughter would go through some of those situations? I was more saddened. I exited most groups and remained with only a handful that had not so much negative information.

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p style="text-align: justify;">During this time, I was working as a bank worker and studying for a bachelor’s degree in accounting on a part-time basis.  In my last semester I knew exactly what I wanted to do after I completed the programme. I didn’t want to work as an accountant. I wanted to do nursing to understand my daughter’s hospital admissions. In my last semester, I changed my units around to finish a Business Administration degree. Three years after her diagnosis, I decided to enrol in a master of nursing degree to understand everything regarding the hospital visit, admissions and SCD. We moved interstate, to Sydney NSW as the University of Sydney was offering a two-year master’s programme if one had a degree in any field as prior learning.

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p style="text-align: justify;">Two years passed so fast and before I knew it I was graduating. During this period, I had slowly started accepting the fact that our lives had changed forever. During my studies, every time I had an opportunity to pick any topic to research, I would always pick either SCD or any medications used to manage SCD.



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p style="text-align: justify;">I remember one night while watching TV channel 7, I saw a doctor from The Royal Children’s Hospital being interviewed about the transplant she had successfully undertaken on a boy with aplastic anaemia. I knew that the condition was also a blood disorder. I took the details of the doctor and I wrote to her, to find out if she knew anything about SCD and whether she could also do a bone marrow transplant to cure it. I was in Sydney, she was in Melbourne. Dr Francoise Mechinaud, a leading Consultant Oncologist at The Royal Children’s Hospital, replied me.

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p style="text-align: justify;">I was excited and anxious at the same time. She said she had done many of the treatment in France, her home country. And that depending on our situation, it may be possible that she could do the treatment for our daughter. She invited us to meet her next time we visited Melbourne.  We didn’t wait for a holiday to Melbourne, within a few days we booked our flights. Our consultation was promising with Dr Mechianud, there was hope that our little girl could get cured.

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p style="text-align: justify;">But we had some limitations at the time.  The chemotherapy used for conditioning was going to be too aggressive on her damaged lungs.  Our daughter’s initial SCD diagnosis was in the form of a severe chest crisis partly damaging her lungs. She required surgery a year after her diagnosis to remove part of her left lung. Hence, the chemotherapy agents at the time were not suitable for her. This and other things Dr Mechinaud explained to us.

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p style="text-align: justify;">But she assured us that there was a possibility.  The moment I completed my studies, we saw light at the end of the tunnel. Our daughter could get cured; we relocated to Melbourne and our daughter became a patient at The Royal Children’s Hospital under the care of Dr Anthea Greenway, a haematologist.



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p style="text-align: justify;">I will end Agnes’s story here and to be continued next week.  If you would like to get in touch with me about this column or sickle cell, please do so on – t.dehinde@yahoo.com and do visit my blog: www.howtolivewithsicklecell.co.uk

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p style="text-align: justify;">Contact: theeditor@punchng.com
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